Saturday, January 29, 2011
My chunky baby....
So Payton is officially chunky! I have now had to pull out her 3-6 months clothes b/c she is too big for her 0-3 month ones. This puts her in the same size clothes as Morgan, who is 3 months older. Let's just say that her enzymes work great!
Thursday, January 27, 2011
Appointments Yesterday
So yesterday was Connor's kidney check up and Payton had a visit with the cf Dr. Everything went great!
Connor's appointment was first. Dr. Swartz let us know that his left kidney still has fluid on it and that they did not get a good look at his right one. As long as the blood work comes back fine, they are not worried about repeating the ultrasound. He also had good blood pressure, which is a concern for patients with kidney problems. We will be released to come back in 6 months! That is a big step for us!
We then had an appointment with Payton's cf team. Since they started her on the antibiotics Sunday, her lungs sound better! The pedi thought she had an upper respiratory infection Monday when we saw them but they sounded clear yesterday! As long as her throat cultures come back fine, there is nothing to worry about there! They also canceled her appointment on the 9th and are moving it to the end of February! I will get a little bit longer before we have to go back again!
It was a long day of Dr's. appointments but Mom and I survived! We then spent the afternoon shopping in Houston! Hopefully all of the lab work will come back normal on both of the kids!
Connor's appointment was first. Dr. Swartz let us know that his left kidney still has fluid on it and that they did not get a good look at his right one. As long as the blood work comes back fine, they are not worried about repeating the ultrasound. He also had good blood pressure, which is a concern for patients with kidney problems. We will be released to come back in 6 months! That is a big step for us!
We then had an appointment with Payton's cf team. Since they started her on the antibiotics Sunday, her lungs sound better! The pedi thought she had an upper respiratory infection Monday when we saw them but they sounded clear yesterday! As long as her throat cultures come back fine, there is nothing to worry about there! They also canceled her appointment on the 9th and are moving it to the end of February! I will get a little bit longer before we have to go back again!
It was a long day of Dr's. appointments but Mom and I survived! We then spent the afternoon shopping in Houston! Hopefully all of the lab work will come back normal on both of the kids!
Monday, January 24, 2011
Headed back to Houston
We head back to Houston Wednesday. After 2 weeks of not going, I will be back there one day every week for the next three weeks.
We start with both kids having appointments Wednesday. Connor will go see his renal Dr and will have blood work done to make sure his kidney still functions properly. Payton then goes to the cf clinic (2 weeks early) b/c she has an upper respiratory infection. I know for a fact we will have a chest x-ray but beyond that, I do not know!
A week from Thursday, Connor goes back to Houston for his 2 year check up and to see his brand new specialist, the ear, nose, and throat Dr. We will hopefully find out why he has so many nose bleeds and they will be able to fix it.
Then, two weeks from Wednesday, we go back again with Payton for her normal CF visit. Hopefully nothing will happen before we get there!
I have just about decided a move should be in our future! I spend a good deal of time at Texas Children's Hospital these days! Maybe they should rent out apartments for their frequent customers!!!!!!
We start with both kids having appointments Wednesday. Connor will go see his renal Dr and will have blood work done to make sure his kidney still functions properly. Payton then goes to the cf clinic (2 weeks early) b/c she has an upper respiratory infection. I know for a fact we will have a chest x-ray but beyond that, I do not know!
A week from Thursday, Connor goes back to Houston for his 2 year check up and to see his brand new specialist, the ear, nose, and throat Dr. We will hopefully find out why he has so many nose bleeds and they will be able to fix it.
Then, two weeks from Wednesday, we go back again with Payton for her normal CF visit. Hopefully nothing will happen before we get there!
I have just about decided a move should be in our future! I spend a good deal of time at Texas Children's Hospital these days! Maybe they should rent out apartments for their frequent customers!!!!!!
Saturday, January 15, 2011
Potty Training
Okay, I am giving in. I have been waiting and waiting (and secretly hoping he would start without me) to start potty training and I am finally giving in. Not sure how nap and bedtime will go since he doesn't hold it either time, but we shall see. I am a little scared but hey, I guess after all we have been through, I can doanything!
Monday, January 10, 2011
Appointments!
Today we had 3 appointments for Connor in Houston. The first was his sweat test, the second his kidney ultrasound and the third his urologist. Well, his kidney ultrasound came back great! He has less fluid on his left kidney than he did a year ago! His urologist said that as long as his bloodwork comes back fine, we will not go back to see him until Connor is 5! That is 3 whole years! On the way home, Payton's cf nurse called to tell us that Connor's sweat test was negative! It was 10 in one arm and 16 in the other! Payton's were 96 and 100! So good news for Connor today and we don't have to go back to Houston for over 2 weeks!
Sunday, January 9, 2011
Houston Tomorrow
Tomorrow we go back to Houston. I have been there so much since December 7th that I am considering moving. Connor goes for his sweat test, kidney ultrasound and check up with his urologist. I am most concerned about the kidney check up though. We are checking to see if he is still holding fluid on his left kidney or if he has outgrown the issue. We pray that it all comes back well and we don't have to look at another issue to deal with.
Friday, January 7, 2011
Genetic Testing
So the big topic of discussion with my family is, will my parents consider DNA testing for cystic fibrosis so that my cousins can know which side of the family it comes from. My dad says it depends on the cost......
Thursday, January 6, 2011
Introduction
Hi! I am Kamie. I am a stay at home mom with a very busy life. I have two children. Connor, who is 2, and Payton, who is 2 months. I have two very special children.
Connor was born at 35 weeks. When he was 2 days old, the NICU doctors discovered a blockage coming down from his bladder. He was flown at 4 days old to Texas Children's Hospital, where we spent the next 11 days. When he was 11 days old, they did surgery to fix the blockage. At his 1 year check up, his left kidney still held fluid but the doctors are waiting to his 2 year appointment to see if it has corrected. We will be finding out Monday how it is doing but it will be something that no matter what happens will have to be checked often to make sure he isn't having any problems with it.
Well fast forward 18 months from Connor's birth. We found out I was pregnant with Payton and talked to Connor's doctors to make sure we didn't have to worry about the new baby's kidneys. We repeated ultrasound at 30 weeks and everything was fine, so we prepared to welcome a healthy baby. Payton was born October 30, 2010 and she was as healthy as can be, or so we thought. The end of November we received a call from her pediatrician that her newborn screen came back positive for cystic fibrosis. They told us they would send us for a sweat test, that she could just be a carrier. They performed the sweat test on December 7, 2010. That afternoon the doctor called us with the results: she has cystic fibrosis. We were floored. You always expect to deliver a healthy child and here we were with two that had major health issues. Not the thing two young parents expect to be handling.
Now, a month after diagnosis, we are doing good. We are settled into our routine and the treatments are becoming a part of our daily lives. We will know Monday if Connor is still hold fluid on his kidney or if it has dissapeared like the fluid on the right kidney had. We will also find out if he too has cystic fibrosis since they are testing him Monday also. It has been a roller coaster of emotions these last two years but the Lord is holding us together and giving us strength when we don't think we could handle another thing. He tells us that He will never give us more than we can handle and so far I think He is helping us handle all of this very well!
Connor was born at 35 weeks. When he was 2 days old, the NICU doctors discovered a blockage coming down from his bladder. He was flown at 4 days old to Texas Children's Hospital, where we spent the next 11 days. When he was 11 days old, they did surgery to fix the blockage. At his 1 year check up, his left kidney still held fluid but the doctors are waiting to his 2 year appointment to see if it has corrected. We will be finding out Monday how it is doing but it will be something that no matter what happens will have to be checked often to make sure he isn't having any problems with it.
Well fast forward 18 months from Connor's birth. We found out I was pregnant with Payton and talked to Connor's doctors to make sure we didn't have to worry about the new baby's kidneys. We repeated ultrasound at 30 weeks and everything was fine, so we prepared to welcome a healthy baby. Payton was born October 30, 2010 and she was as healthy as can be, or so we thought. The end of November we received a call from her pediatrician that her newborn screen came back positive for cystic fibrosis. They told us they would send us for a sweat test, that she could just be a carrier. They performed the sweat test on December 7, 2010. That afternoon the doctor called us with the results: she has cystic fibrosis. We were floored. You always expect to deliver a healthy child and here we were with two that had major health issues. Not the thing two young parents expect to be handling.
Now, a month after diagnosis, we are doing good. We are settled into our routine and the treatments are becoming a part of our daily lives. We will know Monday if Connor is still hold fluid on his kidney or if it has dissapeared like the fluid on the right kidney had. We will also find out if he too has cystic fibrosis since they are testing him Monday also. It has been a roller coaster of emotions these last two years but the Lord is holding us together and giving us strength when we don't think we could handle another thing. He tells us that He will never give us more than we can handle and so far I think He is helping us handle all of this very well!
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